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“I really didn’t know what fatigue felt like before I had this bleed” – Hope’s cavernoma story

In June 2021 I had a sudden onset headache; the only way to describe it is that it felt like a sharp stab to the back of my head. The headache lingered for a couple of days, alongside other symptoms, like the feeling of running water down my legs and twitching in my right eye.

I remember it very well as it was Fathers Day 2021. I had been over to see my parents and they had both mentioned that I didn’t seem myself, I’d told them I had an awful headache and my right eye was constantly twitching. At the time I thought it was a migraine or something related to my neck, maybe a pulled muscle, I just felt very tense and agitated. Several days passed and I still hadn’t improved, so I booked a doctor’s appointment. Within a couple of minutes of being face to face with the doctor she sent me straight up to hospital for a CT scan as she had noticed that my pupils were different sizes and less reactive.

From there, everything happened very quickly – within a few hours I was told I had a bleed on the brain. To rule out a brain aneurysm I had to have an MRI scan, and, in doing that they discovered I had a cavernoma on my left frontal lobe that was bleeding.

I think at that moment in time I was being strong. I almost felt like it wasn’t happening to me and I had disconnected any emotion from my body. I had no idea what a cavernoma was and I’d never even heard of it before.

Seizures, fatigue and giving up driving

It was a couple of days later when I was in hospital that I started having seizures. The realisation of how quickly my life was changing was creeping up on me and it was all completely out of my control.

After a two-week stay in hospital I was discharged with the news of being diagnosed with a cavernoma and epilepsy, which also meant being on medication and losing my driving licence. This was when everything all came crashing down, all I could think was “I’m losing my independence”.

When I was discharged from hospital I stayed at my parents for a few days and I am so glad I did as I wouldn’t want my husband or my little boy to have witnessed it all.  Those few post-hospital days were days I’ll never forget; I was having seizures, I’d lost feeling down my right side and I was having panic attacks as all I was thinking was “this is me, this is my life now”.

It took a few hard months for me to be up and on my feet. I really didn’t know what fatigue felt like before I had this bleed – it was a battle every day to find the energy to get up, but when you are a mum you do just do it.

As well as fatigue I have suffered with anxiety – it hasn’t quite sunk in that there was something on my brain that could possibly bleed again and is completely out of my control …and all the ‘what’s ifs’ that come along with that.

As I had to give up my driving license for a year, my amazing friends and family donated money towards an electric bike which I’ll be forever grateful for. It meant I could get around to local shops with my little boy and try to get some sense of normality back.

I try my best to always be positive, although everyday is different. There are days I wake up and I know it’s going to be a good day, but then there are days I wake up and I know it’s not going to be such a good day. Those bad days can be caused by migraines, fatigue or low moods. I try and see the good in everyday by going for walks, being with family and also allowing my body to rest – which is so important.

The delayed impact of diagnosis

When I was first diagnosed I felt mentally strong – it was only a year later that I felt I was struggling mentally and emotionally. I had gone a year without driving, I had faced battles mentally and physically because of the changes in myself – all of that had a delayed reaction. I felt I coped ok through that year until I got my licence back and I then noticed my mood and everything changed. It was like I hadn’t quite processed everything. It’s strange what your body does to cope!

The cavernoma support groups at CAUK have been amazing – it does help having someone to talk to that understands how you feel, as well as giving you advise… you don’t feel so alone.

My advice to anyone is – don’t be so hard on yourself, be kind to yourself. It is a hard journey but you have to take one day at a time.
Being positive isn’t always easy and that’s okay, we are put in situations to build our character, not to destroy it – and my gosh how strong are we?

My life-changing diagnosis has meant that I have had to adapt and adjust. It is still early days, but I have focused on what is important in my life, realising that what we have right now – in the present – is what we should cherish most. We all have a purpose in life; mine is being a mother, a wife, a daughter, a sister and a friend. That is my purpose, and my gosh what a privilege that is.